Saturday 16 May 2015

No.182. Still breathing, still here.

There has definitely been a gradual deterioration in Chris's breathing. It has been noticeable at night of course, he can't catch his breath if he lies flat or if I lean against him, but the oddest things can literally take his breath away like smoke or dusty air. I stupidly burnt the pasta on the gas hob again (I just can't seem to get used to that!) and I suddenly saw Chris was gasping for breath. I had to open all the windows to get some fresh air in. There wasn't smoke or anything, just a burnt smell and it took ages for Chris to catch his breath properly. I felt really bad, especially because it was totally my fault.

Chris doesn't choke that often now, mainly because he rarely actually eats or drinks anything, but he does occasionally choke on his own saliva, very randomly and without warning. The breathing thing though worries me more than the choking at the moment. He will be seeing his respiratory consultant in June. He is OK most of the time thankfully, I just need to pay attention more and be more careful not to burn things.

What a bizarre and cruel thing this disease is. Chris still manages to have his whisky though. He has one about once a week, but we make sure he is in bed first. He dips his finger in the whisky to taste it and I put the rest down his PEG so that he can feel the effect. He only has a pub measure as it goes in rather more quickly than if he was slowly sipping it. I don't want too much to go straight to his head!!

One of Chris's friends and Jordan are finishing the repairs to his TR7 for him. I may get to take him out for a drive in it yet. That car is not my cup of tea, but Chris has a real thing for her. It would be nice for him to get out in it again if possible.

Other than that life goes on, we live each day adapting as we go, we still laugh far more than we could ever cry. Chris is still here, still with me, still smiling and managing to make the most of this new life that has been thrust upon him.

Please may he be with us for a very long time yet.